I’m a little late to the party, but I wanted to let you know that Lift Labs – a group of scientists and engineers – have launched an Indiegogo crowdfunding campaign in honor of National Essential Tremor Awareness Month. Through March Match, Lift Labs is matching contributions collected on Indiegogo dollar-for-dollar (up to $50,000) to purchase tremor-canceling Liftware devices to those struggling with ET and economic hardship.

Read more: http://www.digitaljournal.com/pr/1769250#ixzz2wG9lxzN1

From the Michael J. Fox Foundation for Parkinson’s Research Newsletter:

Yesterday the U.S. Food and Drug Administration approved the drug Northera — the brand name for droxidopa — to treat orthostatic hypotension in Parkinson’s patients.

Learn more about the FDA’s decision.

This approval after a lengthy review process is a true victory for people with Parkinson’s experiencing this common and debilitating symptom. Orthostatic hypotension is a sudden drop in blood pressure when standing, which can cause dizziness, falls and injury.

Since taking Northera can raise blood pressure when lying down, users are cautioned to sleep with their head and upper body elevated.

Tomorrow The Michael J. Fox Foundation will host a Webinar on orthostatic hypotension and other symptoms that affect the autonomic nervous system, which controls “automatic” muscle movements such as breathing and heart beat that keep us alive. Join us to hear from expert researchers and ask questions on Thursday, February 20 at 12 p.m. ET.

Register for the Webinar.

Posted by: bibmomma | February 17, 2014

The Hitchhiker Scarf – A New Beginning!

hitchhikerI started knitting again!  Yes, after this last round of Platelet Rich Plasma injections, my shoulder and arm are feeling well enough for me to sit with the needles in one place for an extended period of time.  I’ve tried to knit in the last 12 months, to no avail.  It’s been a painful test of patience, a horrible experience that made me hate what I once enjoyed so much.

But last night, while the U.S. Olympic Ice Dancers were skating away, I knitted on the Hitchhiker Scarf.  It’s a fairly easy pattern, one I selected for me to gently ease back into knitting.  I’ve been afraid I would forget how to knit, how to hold the needles and how to perform the stitches.  But, no, it all came back to me.

Sure, the tremors are still there and I had to concentrate on which rows and count my stitches – but that’s all normal knitting stuff.  I’m not sure I would know how to knit without the tremors!  But I could actually hold the needles and the yarn in one place for awhile without the sharp, stabbing pain in my back, shoulder and upper arm!  What a blessing to be able to move the needles freely again!

As the pattern began to unfold before my eyes I could see the jagged, “sharkey” teeth on one side of the scarf begin to emerge!  What a relief to see that my hands and arms could actually perform the task that I feared I would never do again.

So, I wanted to share the new beginning I’ve had this week.  It’s nice to know that I can still reach back into the far, nether-regions of my brain to find the way to navigate around knitting again…and that my arm and shoulder are improving to allow me to do it.  Cheers!

I was reading Medical News Today and found some interesting news about a study with Parkinson’s patients and Vitamin D.  While studying and presenting findings about depression in Parkinson’s patients, Dr. Arnie L. Petersen of the Oregon Health and Sciences University, along with his team of researchers found in the background of their studies that “previous research has found that vitamin D appears to play an important role in the central nervous system, assisting with neurodevelopment and stabilizing mitochondrial function”.

We all should know that Vitamin D keeps our bones and teeth stay healthy and that many doctors recommend that women take Vitamin D supplements on a daily basis.  This is important to keep us from experiencing osteoporosis.  However, in the studies conducted by Dr. Petersen and his team, the discovery was that Vitamin D also helped Parkinson’s patients without dementia improve fluency and verbal learning.  This is significant because it suggests that early intervention with Vitamin D before dementia can affect concentration and cognitive performance.

The researchers also found that higher levels of vitamin D appeared to improve symptoms of depression in subjects who were free of dementia.”  Now folks, this is pretty good news for those of us who struggle with Parkinson’s on a daily basis and have a difficult time staring down the tunnel of “no cure” everyday.  This is a little ray of sunshine in my book!  So take your Vitamin D.  I know it’s one more pill to swallow, but just think…it will help your depression and your cognitive abilities.  That’s great to know!

Posted by: bibmomma | January 20, 2014

Frozen Shoulder

The last 15 months I’ve been fairly useless as a knitter, felter and crafter because of a frozen shoulder.  Add this to the Parkinson’s and it’s been a miserable year.  Yes, I haven’t blogged because there’s no use in complaining, so that’s why you haven’t heard much from me.  Oh yes, I’ve been working – you KNOW I’ve been doing that!  God forbid, I cease to do that responsible, training, helping librarians mosey their way through MARC records, online ordering and understanding eBook digital content.  I’m always on the spot when it comes to helping others -just not so much on the spot when it comes to helping myself.

Frozen shoulder is also known as adhesive capsulitis.  It started with a stiffness in the shoulder, then progressed to the point where I couldn’t move my shoulder or arm, brush my hair, put my arm in a sleeve or raise my arm.  It all started with two tiny tears in my rotator cuff – nothing that could be repaired by surgery – but just enough damage to cause the connective tissue to thicken and become tight so that my shoulder wouldn’t move.  Here’s a picture from the Mayo Foundation for Medical Education and Research that shows exactly how it looks in there.  Imagine how a thickened connective tissue all swollen and inflamed would feel for 15 months.

DS00416_IM02325_r7_frozenshoulderthu_jpg.ashxWell, I’ve been isolated more than usual.  I’ve worked and that’s about it.  At the end of the day I’m too wiped out to be sociable, friendly or witty.  The Parkinson’s still causes my right arm to tremor and that’s the shoulder that is frozen, so the pain generates down my arm when I tremor.  The Parkinson’s has always given me trouble swallowing and the pain causes my throat to tighten up, so now I have trouble eating and I’ve lost over 40 lbs.  That’s not really so bad – I needed to lose some weight!

What really causes frozen shoulder?  Well….they really don’t know.  What really causes Parkinson’s Disease?  Well….they really don’t know.  So, all in all, I’m standing in a quagmire here…waiting for answers.  But I’ve discovered one thing in this mire.  The sun still comes up every morning and my husband still loves me.  My adult children still need me around – not as much as they did when they were younger – but they still call me for advice.  My poodle still wants to sit in my lap and nuzzle me each morning when I drink my coffee and really – does it matter if I know what causes frozen shoulders or Parkinson’s Disease anymore?

I know I have them – they cause me pain – and I endure.  I am grateful for the lessons I am learning.  And I know all about how others have it worse than me.  At least I can still shuffle along and walk.  And for now, I can still hold a spoon and slosh through soup and cereal while jiggling along….and the sunshine is streaming through the window here in Texas today.

So, the pain is relative – it will be here, it’s not going away – not anytime soon.  And I’ll just accept what is given to me as another lesson to learn.  Happy New Year 2014!

During the 17th Annual International Congress of Parkinson’s Disease and Movement Disorders in Sydney, Australia, June 16-20, 2013 a study by Peter Schmidt, Ph.D. was delivered which addressed the “Approach to Treatment of Depression in Parkinson’s Disease”.  This study showed that Parkinson’s patients with depression benefited most when they were treated by mental health professionals or social workers in conjunction with medications.

Peter Schmidt Ph.D. is the lead author of the study and Vice President of Programs at the National Parkinson Foundation.  This study determined that team care, the cooperation of the neurologist, a psychiatrist and a social worker or counselor gives the best result for the Parkinson’s patient – not just prescribing anti-depressants. “The study, analyzing 2,423 patients at 10 NPF Centers of Excellence found 1,121 depressed patients (46%), but at the best center only 30% showed signs of depression.  Centers prescribed antidepressant medications to between 29% and 63% of their depressed patients, but high-prescribing centers achieved no significant reduction in depression versus low-prescribing centers.  Other treatments, however, did correlate with better outcomes.”

It only makes sense that a solid team approach will benefit the Parkinson’s patient to give a better result in battling depression that can come with a diagnosis of PD.  For more information about this study go to this Press Release.

Posted by: bibmomma | July 12, 2013

Informative Article in Huffington Post

I’m always excited to see informative articles about Parkinson’s Disease in major news publications.  Today the Huffington Post Healthy Living has a Blog posting by Judy Santamaria, “When a Loved One is Diagnosed with Parkinson’s Disease”.

This blog posting is especially on point because it emphasizes how Parkinson’s Disease is a progressive disease.  It encourages family members to remember that “this is not an emergency”.  The encouragement in this article asks family members to remember that with a progressive disease they will see changes in movement, changes in balance, emotional issues and independence.  With a progressive disease such as Parkinson’s Disease the family has time to develop a plan to address the disease.  This common sense approach is very encouraging for folks who have been traumatized with the news that a loved one has PD.

This blog article also points out the changing situation with patients’ medications.  Just because a Parkinson’s patient takes a medication for their symptoms, their responses to the medication may change over time.  This presents a challenge and a constantly changing target for the patient and caregivers to work with their physicians to monitor and adapt the medications.

Another feature of this article that is usually overlooked is the need for caregivers to have support.  Many times the focus is on the Parkinson’s patient and we forget about the needs of the caregivers.  The exhausting pace of visiting doctors, therapists, managing medications, managing social situations, dietary restrictions and staying current with information about the disease can drain even the most energetic caregiver.  They need to care for themselves so that the patient receives the energy they need.

And finally, there is a list of resources at the end of this blog article.  I hope you’ll take a few minutes and read this blog – and then let Judy Santamaria know how much you appreciate her taking the time to bring Parkinson’s Disease to the public’s attention.

Posted by: bibmomma | November 14, 2012

Something BIG Happening in the Parkinson’s Community

Did you know there’s something BIG happening in the Parkinson’s community this weekend?  It’s the 7th in the series of Young Onset Parkinson’s Conferences being sponsored by the American Parkinson Disease Association (APDA) National Young Onset Center and the National Parkinson Foundation (NPF)

The conference begins the evening of Friday, November 16th in Cincinnati, Ohio with a Meet and Greet Reception.  The conference will continue with a full agenda of speakers on Saturday, November 17.  If you or someone you know is interested in attending the conference, visit the APDA National Young Onset Center website at apda@youngparkinsons.org

For those unable to travel to Cincinnati, keynote presentation on Saturday will be Webcast live via the Internet. Pre-registration for the webcast is recommended.

Both sponsoring organizations believe that education and support programs like these are important and improve quality of life for people with Parkinson’s and those who care about them.

For additional information, please contact the APDA National Young Onset Center (877-223-3801) or apda@youngparkinsons.org or the National Parkinson Foundation (800-4PD-INFO) or contact@parkinson.org.

Posted by: bibmomma | July 23, 2012

A Blessing….But Still a Kick in the Gut

Wow, after a long, protracted wait, we FINALLY have the Neupro patch back on the market for those with RLS and PD to purchase in the United States.  I feel like this has been too long of a wait for those who have needed this drug.  I am so grateful that the FDA finally saw fit to approve the distribution of Neupro in the U.S.  It’s really political nonsense that kept it off the market for so long.

Well, enough whining about Neupro.  I have news…and I have a mixed reaction to my news.  The Neurologist asked the Radiologists to review my DAT scans of my brain.  They have decided I don’t have degenerative Parkinson’s Disease after all.  I am so weary of the back and forth that I can hardly be joyful about this newest diagnosis.  The decision is that I have Dystonic Tremors…and I’m not sure what that means for the long run.  I still have the tremors in my right arm and leg and I stiffen up, which affects my balance.

I guess I should be jumping for joy at the latest diagnosis, right?  And I am grateful for the news that I don’t have this degenerative disease and what that holds for the future.  But something tells me that Dystonic Tremors doesn’t answer all of my symptoms.  There have been too many different things over the years….and I can’t justify that they have been psychologically induced because I don’t want to have PD.  Never did want to have PD, but just took my doctors at their word…and there have been three Neurologists over the years.

So, I’m at a crossroads here.  I am still interested in new developments and finding a cure for Parkinson’s Disease, even if I don’t have it.  I’m still hoping to give good solid information about the progress in research about the disease.  And I hope that this newest U-turn in my own path doesn’t give me less credibility with my readers.  I am still praying and hoping for a cure.  Too many of you fight the good fight everyday to live a “normal” existence with the most insidious disease, Parkinson’s Disease.

So, for now, I want to remain on the front of the fight with you.

Alice – Bibmomma

I received an email message today from a representative of NEWSY – Multisource Video News.  They informed me that there is a mathematician in Britain that has pioneered a new way to detect Parkinson’s Disease by using a computer to analyze voice recordings.  To find out more about this new possibility of diagnosing PD, take a look at the video on this site: NEWSY.

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